RARE INSIGHTS

Little Mia is a children's book about a very special girl with a very rare disease. This picture book is designed to help parents explain the complexities of rare and genetic diseases to children.

Alex and JuanJo are part of The Pongo Bongo, a social communication agency specialising in helping small charities.

1 in 10,000 babies are born with Stickler Syndrome, a condition that effects the entire body: joints, hearing and sight. Alex and JuanJo first heard about Stickler Syndrome in December 2014 when we were working on a campaign to raise awareness and funds for people affected by this condition

Our aim is to help children who suffer from this condition cope with the illness. Through illustrated tales, we want to help children and adults, whether they are affected or not, to understand this and other rare diseases and ultimately to improve their quality of life by making more people aware of their condition

With events such as RAREDISEASEDAY doing much to raise the profile of rare diseases the team at The Pongo Bongo wanted to do their bit and take an active part in Rare Disease Day 2018. They have teamed up with unbound.com to create this special picture book for children. Through illustrated tales, they aim is to help children and adults, whether they are directly affected or not, to understand this rare disease and to improve the social experiences of those who are, by raising awareness.

A version of this picture book has already published in Spanish telling the story of Little Anton (https://vimeo.com/196412393). Through the success of this campaign they have been encouraged to bring the project to the English speaking rare community.

They have launched a crowd funding campaign to raise the funds necessary to make this project a reality. Through this picture book we aim to raise awareness in a positive and age appropriate way.

As well as directly to families our vision is to see Little Mia in libraries and primary schools across the UK. But we need your help.